Endometriosis (because I can’t think of a good title)

Well hello little ones. Update time.

I saw Dr. Mathias 3 weeks ago, and crawled into his office weary and pessimistic, anticipating more dead ends.

We addressed the nausea and anxiety and myriad other symptoms which all led back to the Lupron. That effing Lupron! He explained that the estrogen spike Lupron causes within the first week of injection directly affects the neurotransmitters that control the limbic system which…guess what…controls sleep and anxiety, among other things.

I told him I had come to terms with my love/hate relationship with Xanax, and if I needed to increase the dosage, then so be it. Flying the white flag of surrender. But my concern was that my body seemed to be developing a resistance to the drug at an alarming rate, and I didn’t want to keep increasing my dosage to no avail. But I was at the point of needing a daily dose so what’s a girl to do?? 1mg puts me to sleep during the day, but 1/2mg doesn’t even touch it.

Even though he called me a “challenge”, he wasn’t fazed by my body’s apparent disregard for itself. While my symptoms are definitely on the more severe side, it was simply because I responded really well to the Lupron. So it’s going to take a bit more to get me back to normal.

He suggested a very safe drug for my daytime anxiety – Gabapentin. The typical dosage is between 800-900mg, but he has me on 100mg 3x/day. I noticed a difference THE DAY I started this. The Gabapentin has done wonders for my daytime anxiety, and has actually helped in decreasing the amount of Xanax I need at night. Sometimes I only need 1mg!!! This, you guys, is huge.

As far as the nausea goes, he said it’s the birth control. So he took me off of it until I start a period, then I’ll hop back on continuously and my hormones will be balanced and I’ll feel amazing (my hopes and dreams). My body is a boiling mess right now, trying to recalibrate after the shit storm of hormone therapy it’s endured since April, and the birth control was interfering with that balance.

“Well, what if it takes 1-2-3 months before I have a period?” He shrugged his shoulders and said “Then we just wait.” Ok. But, everyone has done a sufficient job of putting the fear of god in me for when “the big event” happens.

“It will be terrible.”
“It will be straight from hell.”
The worst you’ve ever endured.” 

gulp

I explain that my pain was already at a 10… which is why I had this surgery in the first place. I can’t cope if it’s worse than that.

“Well, if that happens, just call our office and we will help you through it.”

“No no no. What if this happens at 6am on a Sunday? Then what will I do?”

“Ok, then here’s what I’ll do: I’ll prescribe you a pain medication that you squirt into one nostril, and it should take affect within 30 seconds.”

“And this works better than Vicodin and all those other pain meds?”

“Oh yes. You shouldn’t feel anything with this.”

That’s what I’m talking about. The med he prescribed is Butorphanal Tartrate. Anyone ever heard of it or used it? It is highly controlled, and there were about 5 security layers between me and the medication.

I keep the spray + tampons in a bag I call my “emergency kit”. My emergency kit goes with me EVERYWHERE, like a binky. One friend suggested to not be so afraid and instead say: “I know you’re coming and I’m ready for you.” I say that, but really, I’m still afraid. As if my uterus is planning some diabolical unveiling at the most inopportune moment, like my brother’s wedding next month.

As of now, my nausea has almost disappeared, to where I only get it a couple of times a week and it’s bearable. My anxiety has decreased too. It’s not completely gone, mind. Some nights I can fall asleep around 2:30am, some nights it’s still 6am. That’s why I’m not making a big deal about it either way. Sleep is still that tricky fly I’m trying to catch with chopsticks. But, no big deal.

I’ve passed the 60 day mark; now I’m eagerly awaiting Sept 27 which will be my 90 day mark and NO MORE LUPRON affecting my system. Heyoooh!

Dr. Mathias is quite the curious guy. While he prescribed me new medication for my anxiety, he also suggested that I go see a practitioner of BEST to clear my energy fields, because there are things in my genetic code that are interfering with my healing. Alright, done. I get my fields cleared on the 16th. I’ll keep you posted on the results.

OH! I almost forgot. A new blog is in the works. In an attempt to not be imprisoned by my endo diet, I acted on a whim and made gluten free/sugar free waffles with “fake” syrup. They were glorious. So I’ve decided to start an endo-friendly recipe blog to keep my brain from going to mush and to grease the wheels of the creativity train that has been idling by the platform. I have several recipes in the works and am really excited that having endo doesn’t mean I will be a “grilled chicken and veggies/no sauce” kind of girl for the rest of my life. Ima tear some food up, y’all.

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8 Responses to Endometriosis (because I can’t think of a good title)

  1. bill says:

    Hi Erin,

    I sent a note to you a while back about coming to your blog after googling “robin williams and xanax.”

    Just a quick note to you about the Xanax (Alprazolam) and Gabapentin (Neurontin). Xanax has massively short half life (and it seems you are pretty sensitive to it) and Gabapentin is a seizure/anticonvulsant med. I encourage you to do more research on those drugs. In any event, be very, very careful with any withdrawal (even just dropping your dose from 1MG to .5MG). Peter Breggin’s book has a lot of answers.

    Here are some other resources for you:

    The Ashton Manual, “Benzodiazepines: How They Work and How to Withdraw”.
    http://www.benzo.org.uk/manual/

    2011 Supplement to the Ashton Manual:
    http://www.benzo.org.uk/ashsupp11.htm

    “Your Drug May Be Your Problem, How and Why to Stop Taking Psychiatric Medications” 2007 fully revised and updated edition, by Peter Breggin, M.D. (a Psychiatrist)
    http://www.amazon.com/Your-Drug-Problem-Revised-Edition/dp/0738210986/ref=sr_1_1?ie=UTF8&qid=1376150744&sr=8-1&keywords=your+drug+may+be+your+problem

    Breggin on Xanax:
    http://breggin.com/index.php?option=com_content&task=view&id=85

    Breggin on Gabapentin:
    http://breggin.com/index.php?option=com_content&task=view&id=199
    http://www.breggin.com/index.php?option=com_content&task=view&id=43&Itemid=66

    “Recovery & Renewal: Your essential guide to overcoming dependency and withdrawal from sleeping pills, other ‘benzo’ tranquilizers and antidepressants” by Bliss Johns 2012
    http://www.amazon.com/dp/095721300X/ref=pe_175190_21431760_C1_cs_sce_dp_1

  2. sowtheseed says:

    Hey I just tried to comment and I’m not sure it worked. Was wondering if you’d email me so I could ask you a few questions about a laparotomy surery with dr mangal. No need to post my comments but I would love the opportunity to chat with you. Thx!

  3. Georgie Healey says:

    Hi, great to find your blog, I have my surgery on wednesday 28 November. . . Was looking forward to it, though skeptical about recovery, would love to know how you are now? I am 33 and been suffering for about 18 years now, had laparoscopy nearly 3 years ago which diagnosed it, been trying to conceive and fertility treatments since and now surgery to bowels, bladder , etc etc. Really hope you are seeing light at the end ‘o tunnel?! How do I find your endo diet blog, as want to start it after surgery. X x

  4. Jess says:

    Hi Erin, I’m an Endo suffer myself. Going through the process of being seen by Dr. Channin who is in office with Dr. Mathias. I really wanted to get in and see him. I’m having the worst pain ever and not getting relief nor anything for pain from Dr. Channin. Have you seen a pain management doctor? I’m in the Houston area. I’m desperate. I can bearly work at this point. Any suggestions???

    • erinparker75 says:

      Hi Jess, so sorry I just saw this. Have you had excision surgery yet? After my surgery I was pain free. What has Dr. C done about your pain? Pain meds don’t work for me, but oddly Naproxen does. If you are in that much pain then seeing a pain mgmt dr is definitely something to do. You shouldn’t be suffering? How are you now? I see you wrote this back in August…

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